I saw my endocrinologist for a follow-up visit this week. We had re-tested my adrenal function and it was not so great. My adrenals are functioning, but nowhere good enough to try to taper the hydrocortisone yet. The plan is to wait another 6 months and retest. If the adrenals are working better we'll try to taper again. She said it can take a long time to wake the adrenals up again and is not surprised by my numbers.

Still, 6 months. I feel pretty discouraged. It's not like I feel good or even decent on this dose of HC, or on steroids at any dose. And there's this long chain reaction that the steroids maintain. While I'm on them I can't lose weight. If I can't lose weight the increased intracranial pressure persists, which is a problem by itself but also keeps me on a diuretic. If I can't lose weight the lower extremity swelling is much worse, which keeps me on a second diuretic. And if I can't lose weight I have sleep apnea (though it's still undiagnosed), which makes me exhausted, increases the risk of other conditions and ironically, prevents weight loss. Being exhausted means I can't exercise or function much..... You see how it goes. "Another 6 months" feels like a prison sentence.

And there's another stupid twist: I just finished rtx, which starts wearing off in about 7 months. So just when we'll (hopefully) be tapering the HC, the Wegs will be waking up, making it impossible to tell if symptoms are due to the HC-taper or Wegs activity. This is upsetting, to say the least. I'm gonna have to just ignore my hopes and fears and stay in the present moment, even though right now I really just want to cry.